Welcome to /r/crohnsdisease!

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Crohn's disease is a type of inflammatory bowel disease that may affect any part of the gastrointestinal tract from mouth to anus, causing a wide variety of symptoms. It primarily causes abdominal pain, diarrhea (which may be bloody if inflammation is at its worst), vomiting, or weight loss, but may also cause complications outside the gastrointestinal tract such as skin rashes, arthritis, inflammation of the eye, tiredness, and lack of concentration.

Please remember that there is currently no known pharmaceutical or surgical cure for Crohn's disease. Treatment options are restricted to controlling symptoms, maintaining remission, and preventing relapse.

IRC:

We've got an official IRC channel moderated by /u/luaduck and other volunteers. You can find us at #crohnsdisease on freenode (webchat). IRC rules are the same as the subreddit, so no talking about drug swaps, etcetera.

We accept people with Crohn's, Ulcerative Colitis, indeterminate, and the people that love and support them with open arms. Welcome!

We are not doctors. This subreddit should be considered a support community, never a substitute for a doctor's advice. We can not treat or diagnose.

Please be nice. We like to keep this place as a supportive and informative atmosphere. Remember, you are in fact speaking with another human being on the other side. It is fine to have disagreements on the more controversial topics, but the argument degrades when name calling and insults come in.

Many people find diet can make a difference, but please discuss with your doctor first. Also remember what works for one person can make things worse for another.

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It's unbelievable how doctors and hospitals have absolutely no interest in what food that passes through a compromised digestive system.

It's astonishing.

My wife and I have been at a hospital for five days. She was admitted following several weeks of increasing, severe abdominal pain, accompanied by an intense desire to not eat anything.

After a lot of uncomfortable testing, the docs now believe she has Crohn's Disease. I've been lurking in this subreddit for a few days. And it has been really amazing and helpful in dogging the multiple GI Joes who have been probing the bowels of my favorite person.

Here's the thing: We get that she needs to be pumped with 'roids to calm down her guts.

But, seriously, no one has discussed diet. We had to demand a diet consult. They keep bringing her ice cream, jello, and chicken broth (we keep reminding them she's vegetarian ... and dairy is kinda supposed to fuck things up). I've made a run for sugar free apple sauce. (Any other suggestions for food to control a major flare-up that seems really, really slow to respond to intravenous steroids???)

Many thanks. My dad has had active Ulcerative Colitis for about seven years, so I'm familiar with the maddening mystery and trial and error that surrounds the causation/abatement questions.

After reading your post, I bought her a pretty badass journal to track her diet. So far, it's basically two bites of unsweetened, skinless applesauce, twice daily.

She currently views food as the enemy, and so she's been avoiding it. Knowing that a painful, bloody, explosive bowel movements is on the back-end of every meal is a big disincentive to dining, and is causing her a lot of anxiety. Now, it's day 7 in the hospital with very little improvement from the 'roids.

You have to figure out you're own diet. I can eat whatever I want, it'll all react the same way. Painfully, and so forth. Doesn't matter if it's insanity peppers, or water.

We have to eat. Yep, it's painful. It's not fun. But we have to eat to live. We don't get that choice. We have to face our pain a few times everyday. Unless we want to die. I take a lot of suppliments. Protien powders, multi vitimins, and the like.

Truth. It depends on how bad I'm doing, but usually it's a half scoop. Which for most, is about 12-15 grams of protein. It isn't much, but it's better than nothing. And again, for me it all comes out the same way, and it's all painful.

I wish I could help this, with diet. However I am one of the unlucky few that nothing I eat helps. Honestly I'd give my eye teeth for some bachlor chow.

I am the same way except that things corn, popcorn and whole nuts make it A LOT worse for me. Also protien/suppliment powders seemed to make my symptoms worse so I stopped that right away. When I'm in remission I can eat basically anything with very little issue (so far). I was scared of eating for a while even after my flare was gone.

I haven't learned how to not be afraid, even when I feel well. Truth be told, I shouldn't be anyway since it all reacts the same. Nothing to fear, and all that.

I hear you on the corn and so forth. I like to eat a bunch of nuts and then when I check out my poo (as I'm sure every one of us does eventually) it's got all the little undigested nuts. It just looks funny. If I have to clear myself out, I'll eat as much of that stuff as I can stand. That and Colon Blow.

I've always heard this, but I have no idea how to go about it in my own case.

I'm a super taster and I have never been able to handle anything other than bland textures and tastes. The slightest deviation and I start to get woozy even thinking about eating. I simply can't try different things.

How do I go about dieting now that all of the sudden, the 5 or 6 things I actually can eat, make me feel horrible?

I'm not sure what a super-taster is, but I was a pretty picky eater and ended up expanding my tastes out of necessity. Things I was comfortable with were out and after over a month without much more than a piece of bread going into me, everything seemed appetizing. When I started to get better, I just approached everything with an open mind. I knew it was OK to not like something, but I have found that I've enjoyed more foods than I haven't.

Just test the waters slowly, and try to be positive that you don't judge a food before you actually try it. I used to be sure that I wouldn't like certain foods, now since I have given them a fair try, I'm yet to have something that I've hated as much as I assumed I would. Like I said, some things I wouldn't make again, but I wasn't gagging from the taste like I assumed I would.

A super taster is a gene issue that causes me to be able to taste very minute flavors. I can barely handle putting table salt on my food. I've tried, my girlfriend all but forced me to eat a Korean dish the other night and it tasted fine, but the texture was causing my entire body to freak out. I'm always trying to keep an open mind, but it's just so intense. I can't even handle breadsticks...

I've got nothing for you then, sorry. It sounds like quite the predicament you have.

How are you with shakes? If your hurting for calories, vitamins, and/or minerals, finding a soy based supplement that you can tolerate may be an option. At least until you find other foods that fit your palate, and gut. No one really likes the boost or ensure diet, but if it's the only alternative, I guess it may just be about trying to find the lesser of two evils.

It all makes me feel horrible. Honestly you eat to live. It's not fun, and it's not enjoyable anymore. You eat to live. So you're faced with a choice, eat the things you're used to and feel awful. Eat the things you're not used to and maybe feel awful, or not eat and starve to death.

Dietitians may be of limited help. I spoke to a couple after I was diagnosed, and they both tried to push the recommended diet for normal people (as per Canada Food Guide). One of them didn't even understand why I can't handle a high-fiber diet.

A food diary is a good way to figure out your triggers. There are some good books about Crohns, with suggestions on potential triggers as well as possibly helpful foods.

I'll 2nd what kindachunky said. I've dealt with my son's Crohn's for 5 years now and I understand your frustration. It'll be almost impossible to find out what foods might cause problems while she's still so sick. When things get calmed down then she needs to keep a food diary. Most likely patterns will emerge and she'll know what to avoid and that will help a bunch.

As an example of doctors not knowing much about nutrition I'll share this gem from my son's GI: the doc said that people who eat McDonalds and other fast food don't pass gas because those foods don't have fiber and fiber is what causes gas. So his expert opinion to solve my son's gas problem was to prescribe crap food that would land my son in the hospital in about a week's time.

Since your wife is vegetarian can she eat vegetable soup with just salt for seasoning and all the veggies well, well cooked. And none of the hard to digest vegs like corn, etc. I'm thinking soup you make so it has none of the chemicals that prepared foods have. Think only ingredients that provide nutrition. Soda crackers, toast, graham crackers, etc. can work unless gluten/wheat is one of her triggers. Cooked fruits and vegs will generally be better tolerated and digested than raw. Good luck. You'll both get it figured out but it's going to take longer than you want.

Thanks. The current theme is: This really sucks for now, but we'll deal and get over it. She's a total badass who completed an Olympic Triathlon last month, before this spiral into misery. I have total confidence in her resilience, though she is feeling pretty dern low right now.

They know more than you. They're not wrong for not discussing it– I'm sure they have a reason which they would share with you when asked. My doctors (and I have about 4 different really good IBD specialists) straight up believe that diet has little to nothing to do with the treatment or maintenance of IBD.

But just try to remember, they know more than you do about the disease. Dairy, for example, should have nothing at all to do with a flare unless she is already lactose intolerant.

Suggestions for a nasty flare up that doesn't seem to be responding to IV steroids? Remicade, probably. Dieting isn't going to fix something like that.

I have the same experience as you. My GI doctor and my GP, plus the dietician that my mother works with all believe diet is pretty low on the list of reasons for a flare-up. There are some general rules for a few different foods to stay away from (tomatoes and all the things made from them), and some that are generally OK (white bread/rice), but it's pretty basic and everything is person-to-person.

Someone needs to tell my surgeon this... I was having some pretty good complications after a total colectomy and his response time and time again, "if you just stay away from any tomato sauce you'll be fine. Just eat alfredo on pasta and that's all it takes." now while it was logical advice we wanted to slap him for thinking that it was that simple.

Tomatoes belong the the nightshade family of plants, along with eggplants. This group contains several chemicals which are inflammatory in nature. For non-IBD people, it's not enough to trigger much of any response. But for those of us with an inflammatory disorder, it can be a different story (for some, not all). Also, the skins and seeds tend to be hard to digest.

One other food that has been shown to aggravate autoimmune inflammatory disorders is salt. Most westerners consume tons of the stuff, because manufacturers load up everything with tons of it for flavor.

The healthiest diet typically consists of home-made meals. I make my own bread (way easier than it sounds), and make sure to portion out my meals properly. This means not making a massive sandwich and washing it down with something. I'll eat half a sandwich with a handful of veggies, a piece of fruit, and so forth. Smaller amounts of each food but more variety seems to be key to my dietary survival as a crohnie.

But, in the end, everyone is unique. Whole grain is supposedly good for Crohn's and raw veggies are bad, but for me it's inverted. Whole grain makes me feel like I want to die, and a handful of sugar snap peas and baby carrots with every meal makes me feel like a million bucks.

During a flare up, just stick with the soft and bland. It's boring and sucks, yes, but if shes having problems with those foods, the last thing you want to do is to do your own diet experiment and find out it's something that would set her off even in a healthy state.

I disagree with some of this. It common that some foods will aggravate symptoms, such as corn, nuts, and raw vegetables. Anything that can lodged into the intestines and inflame them. Not everyone is the same, but diet ought to be looked at.

It's craziness that more doctors don't suggest finding out what foods work for you and then going with that. Neither of my doctors since being diagnosed even suggested it. Maybe they just didn't think of it, or I need another doctor. I don't know.

I don't think a dietitian is necessary, however. Have her try eliminating some foods from the diet to see if she experiences less aggravation of the condition. However, be sure that if you're taking out some good source of a vitamin, mineral, or fiber (she still needs it, lest she become constipated), that you replace that food with something else that will provide it.

I guess I was unclear in my meaning, I was mostly referring to diet not being an effective treatment for either rescue therapy or maintenance therapy. Everyone does have their foods that cause unpleasant symptoms (it's candy in excess for me), but it's our current understanding of the disease that these foods can't lead to a full on flare.

Thanks for the suggestion. I'm a little freaked b/c my wife has never been on steroids before, so it's not like she has built up a tolerance.

I agree that docs know more than me, but I still question their judgment based on professional experience. I am a litigator who deals a lot with pharmaceutical companies, and I am extremely dubious of pro-medication biases that wholly rule out diet and exercise. Especially when there is a profit motive built in. (That said, I am all for meds when there is a proper risk-benefit analysis and the efficacy outweighs the risks).

From the GI specialists I have spoken to, they all seem to agree that they have to treat Crohn's and Colitis on a case-by-case basis, which sounds a lot like what you are saying. I would seriously question the credibility of a specialist who rules out diet as a factor.

I'm not a total noob in this area. My dad has had Colitis for a number of years. He says eating bread is like eating broken glass.

I'm just really frustrated. It's been a week now. At most, she eats a few bites of apple sauce.

Hey dude trust me, I know that frustration, I've been there. All of us on this subreddit have been there. When you're in the hospital, things seem really hopeless and you'll latch on to anything if you think it'll make someone you love feel better.

When someone's flaring, lots of food can feel awful, that's not really what I'm talking about. Usually anything rough. My point is it is the current understanding of the disease that diet cannot change the disease itself in any way- a specific diet isn't going to stop this flare, and a specific diet isn't going to keep her healthy once she's rescued. Everyone has trigger foods that cause unpleasant symptoms, but those symptoms will clear with the cessation of the food intake. For me it's candy in excess.

Remember that losing weight isn't dangerous until it becomes dangerous. As long as she's above that point, don't worry about it if she eats nothing in the hospital at all. She'll eat EVERYTHING once she's better (the three weeks after getting out of the hospital hold some of my fondest memories).

I was in the hospital for 10 days and steroid non-responsive. Remicade was started and it's been an absolute godsend for me. That might be the route you're looking for.

Everything you are saying makes perfect sense. I finally got on the phone with a GI at another hospital who broke it down for me: there's a lot of anecdotal evidence of diet triggers, etc., but no universal support for a Crohn's friendly diet, because its case by case, person by person. You're right that it feels hopeless at times, and exceedingly frustrating. But I'm beginning to accept that this is a slow process, it sucks, and you just have to bear through it. I think they are trying the roids for a few more days and -- if no improvement -- then switching to Remicade. I just hate seeing my favorite person suffer. Thanks for sharing your sobering wisdom. My wife will totally wrestle this beast into submission. Seriously, I appreciate your thoughts.

With Crohn's, someone's diet during a flare up is almost entirely up to them. The exceptions being anything that won't break down in your stomach: Popcorn, Corn, Seeds, Nuts etc. This is because during a flare up your intestines tend to swell and become inflamed, making it easier for food particles to get stuck and cause a blockage.

That is the last thing you want.

As for everything, what's safe is what you can eat without hurting. Like kindachunky explained.. I could eat fast food and I would be fine (as fine as you can be during a flare up), but raw vegetable or even cooked potato which is supposed to be a "safe" food made me keel over and die.

Food varies a lot. I never had any success with diet control. However my friend did - he went on a long-term total liquid diet, and it put him in remission. That kind of case is rare (and also painful - it took two years to get back to a normal diet) but a liquid diet or partially liquid diet is often very helpful while you're flaring. It just gives your guts a rest while they heal, instead of aggravating them with stuff passing through.

If you talk to a dietician, you might be able to have your wife attempt an elimination diet. They start the person on very bland foods, then slowly introduce other foods to figure out which ones will trigger a reaction.

Otherwise, everyone is right that this sort of thing varies dramatically. I still agree that it's totally insane that the doctors won't talk about diet!

I'm currently on the specific carbohydrate diet. Honestly I believe it's helped me a lot...
I see a lot if conflicted views against diet and Crohns but I truly do believe that what you put through your system truly matters.

Since being on the diet my bloods and condition has only improved (hopefully it will stay that way), but I do have my doubts too since I'm still on medication (I'll be off them by next year hopefully, because I'm currently in my last year of high school). However if I did continue eating the crap I did before, I wouldn't be feeling as energetic as I do now, If its not helping with my Crohns it's helping with my overall well being.

But of course I can't base my experience as evidence, it's just what has worked for me, and I'm still on medication. I think everyone just has to try different approaches to see what works best for them.

Dieting can be difficult, but eventually it just becomes a way of life, and so worth it in the long run, especially because you're just not putting all of that crap into your body, which can cause other diseases. But remember everything in moderation, even too much of a good thing can be bad.

Also I remember after being released from hospital I was surviving off of yoghurt (homemade), bananas and chicken soup until the diarrhoea subsided and then introduced soft over cooked/ easy to eat foods there after. But of course since your wife is a vegetarian she could make a vegetable soup, just be sure to cook it until all the vegetables are mushy else it might be difficult to digest. But that's just a suggestion if she'd like to try. I also recommend researching the disease plentifully, and obtaining different perspectives of living with the disease, an how other deal with it, just try to adopt as many tips as you can and keep the ones that work for her :)

Having a disease like this can be very frustrating, at times can even bring along tears, anxiety and embarrassment. If its always looked at negatively it's going to be difficult to survive with, if she doesn't really let it control her on the other hand, she can continue living life normally, and even to the fullest... Yes sometimes travelling and going out can be difficult, and there'll be good days and bad says, but hey there's many ways to control it. It's all going to be okay. Remind her of that. And continue being supportive :)

This just went on from dietary inquires to basically a whole essay about the tips of how to survive with a new diagnosis I crohns. Sorry for that. But I do wish the best for your wife and I hope she feels better soon, and I hope she doesn't have to eat anymore of that awful hospital food anymore, that stuff is disgusting.

Totally great response. Really appreciate it. Your candor, advice, and logic weighing your anecdotal, personal success w/ diet and lifestyle provide both good information and comfort. The fact that you are still in high school is astonishing. My 20th high school reunion is this year. I always say -- only half jokingly -- I didn't feel like a real person until I was in my 30s, when I finally got my shit together and went to law school. You're way ahead of most of us, my friend.

From these articles and everything I've read, here are the common links:

-No nuts,

-no heavy fiber (light fiber is ok),

-high protein foods,

-no whole grains,

-limit carby foods overall, get rid of simple sugars. GET RID OF HIGH FRUCTOSE CORN SYRUP.

-limit/eliminate lactose even if you're not technically lactose intollerant

-keep fats in the diet, but remove greasy foods.

I should also say that I started like this but eventually reintroduced nuts and and other things back into my food. I can drink some milk, though i go for Lactaid. I got rid of cereals and other processed foods. I eat a lot of chicken. I got rid of sides like potatoes and rice, though I have since reintroduced them.

The biggest realization I've had is the timing of the food over the contents: Never go hungry. Never feel that deep hunger feeling. The moment I do, I know I'm in for it. Even a little bit of food will keep that deep hunger at bay along with the acute period that comes with it.

Sorry for the wall of text and possible grammar mistakes. I hope this helps, and I should add that yes, everyone is different, but this could be a good launching point.

Full disclaimer: I take Asocol 400mgX3, X3 a day. Pretty entry level stuff. I control my crohn's almost entirely through diet with moderate to high success. I've had Crohns since 2004 along with the Asocol, I only really started to figure things out in 2009-2010 once I got a good list.

I tried the SCD and it ultimately didn't improve my Crohn's, but it did improve my mood and energy levels, which is why I've ended up on a paleo-esque diet.

I talked to my GI before starting, and he told me that the science wasn't there to support it, but it's a hard thing to study, so he wouldn't rule it out completely. He gave me permission to try it as long as I kept weight on.

SCD has some success stories, and plenty of failures. It's hard to do, so I would recommend just trying to use a food diary to figure out trigger foods first, but if you've done that and still want to explore dietary treatments, this might be something to consider. Certainly not a tried and tested remedy though.